Contact a Family (CaF) are the only UK-wide charity providing advice, information and support to the parents of all disabled children.
Downs Heart group
The Down’s Heart Group is a UK charity which offers support and information relating to heart conditions associated with Down’s Syndrome. They also can provide specialised help to parents and professionals.
Somerville Heart Foundation (GUCH)
The Somerville Heart Foundation started with the name the Grown Up Congenital Heart Patients Association and was renamed in 2022. It is UK charity, founded in 1993 to provide information and support for young people and adults who were born with a heart condition, and their families.
Heartline
We provide information on congenital heart defects, in the form of fact sheets about children in hospital, their rights, medicines, pain, preparation for surgery, different disorders, education, exercise, feeding problems, etc.
Little Hearts Matter
Little Hearts Matter is the national voice for families where a single ventricle heart condition, such as Hypoplastic Left Heart Syndrome, Tricuspid Atresia, Double Inlet Ventricle or Pulmonary Atresia has been diagnosed. The charity works with medical and social care teams to offer a multi-disciplinary approach to the support and information needed by this group of people and their carers.
Family Fund
The Family Fund helps families of disabled and seriously ill children under the age of 16. We give grants and information related to the care of the child. The range of grants includes holidays, leisure, laundry equipment, driving lessons and lots more. The range of information includes information sheets on subjects such as benefits, holidays and transport, and books such as Taking Care, After 16 – what’s new? and more.
The Ashley Jolly Sad Trust
The Ashley Jolly Sad Trust (SADS UK) is a voluntary organisation that exists to raise awareness about little known heart conditions in young people and provides information and support to families who have experienced the sudden unexpected death of a loved one due to such a condition. The Trust fundraises to purchase and donate heart monitoring equipment to detect potentially fatal heart conditions in order that once a condition is identified the patient can be referred to a cardiologist for treatment, to minimise the risk of sudden premature death.
Children’s Heart Unit Fund
CHUF is a voluntary charity who’s aim is to help support the Children’s Heart Unit at the Freeman Hospital In Newcastle. They help by funding equipment, personnel, research, or anything else that may be needed to help keep the unit at the forefront of children’s coronary care.
Barth Syndrome Trust
Barth syndrome is a rare and serious genetic disorder. One of the ways it can manifest is as Cardiomyopathy. The Barth Syndrome Trust was created to better serve the needs of affected families both in the UK and the rest of Europe.
Transplant Kids
This site has been created and is maintained by a transplant family. The information is meant to be in words that a child may understand and not guaranteed to be entirely correct in all cases. Every transplant centre has it’s own protocols and every child is unique so there will always be variations in care and treatment.